Amplifying the voices of children and adults with lived experience.
Honouring the strength of families.
Growing in understanding together.

This project will capture the voices, experiences and everyday lives of children and adults with lived experience of:

  • Developmental and Epileptic Encephalopathy with Spike-Wave Activation in Sleep (DEE-SWAS)

  • Epileptic Encephalopathy with Spike-Wave Activation in Sleep (EE-SWAS)

  • Continuous Spike-Wave in Sleep (CSWS)

  • Electrical Status Epilepticus in Sleep (ESES)

  • Landau-Kleffner Syndrome (LKS)

Drawing on personal perspectives and research insights, this project is building connections with clinicians, therapists, researchers, educators, and anyone else who wants to better understand the challenges that people who have received one of these diagnoses experience, and to help improve their quality of life.

Child, Adult & Family Voices

School, Work, Community, Identity and Belonging.

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Why documenting lived experience with DEE-SWAS and related conditions is critical

These accounts are not intended to provide clinical descriptions of DEE-SWAS, EE-SWAS and related diagnoses including Landau-Kleffner syndrome (LKS), Continuous Spike-Wave in Sleep (CSWS) and Electrical Status Epilepticus in Sleep (ESES).

They show what, as families in a global network, we share with each other about what life for our children can be like, day to day.

Epilepsy research has already achieved incredible things, helping define syndromes, genetics and seizure patterns (for example, the seminal work of Ingrid Scheffer and colleagues) (1). However, in rare conditions more broadly, lived experience is less often captured in research (2).

Around 1 in 590 children are diagnosed with a developmental and epileptic encephalopathy (DEE), and more than a quarter present after age three, including children with DEE-SWAS and EE-SWAS (3). While individual syndromes such as DEE-SWAS are considered rare, DEEs are not rare in a global sense. There are around 2.4 billion children under 18 in the world, which suggests that more than 4 million children worldwide may be living with a DEE, based on current prevalence estimates (3, 4).

The burden is likely to be even higher in parts of the world where infections, birth complications and limited access to early care are more common, including regions such as sub-Saharan Africa and South Asia (5).

Families affected by DEE‑SWAS related conditions have been let down by research that has concentrated on early-childhood-onset DEEs. As one parent and medical professional, whose child was diagnosed decades ago, has observed, families are still asking the same questions and seeking the same help - suggesting that far too little has changed.

Poke et all found that: “Epidemiologic studies have focused on early childhood–onset DEEs. These do not fully reflect the burden of these disorders because 27% of DEEs and 70% of ID+E begin later, with seizure onset after the age of 3 years.” (6)

The International League Against Epilepsy states that: “This syndrome (DEE-SWAS, EE-SWAS) is characterized by seizure onset 2-12 years of age (peak 4-5 years).” (7)

This site highlights real-life factors that can shape everyday moments, to either hold someone with one of these diagnoses back or help them move forward in life, depending on how well their needs are understood and supported.

Important note: Nothing on this website represents a universal experience or expert clinical, educational or disability advice.

  1. Scheffer, I. E., Berkovic, S., Capovilla, G., Connolly, M. B., French, J., Guilhoto, L., ... & Zuberi, S. M. (2017). ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 512-521. DOI: https://doi.org/10.1111/epi.13709

  2. Von der Lippe, C., Diesen, P. S., & Feragen, K. B. (2017). Living with a rare disorder: a systematic review of the qualitative literature. Molecular genetics & genomic medicine, 5(6), 758-773.
    DOI: https://doi.org/10.1002/mgg3.315

  3. Poke, G., Stanley, J., Scheffer, I. E., & Sadleir, L. G. (2023). Epidemiology of Developmental and Epileptic Encephalopathy and of Intellectual Disability and Epilepsy in Children. Neurology, 100(13), e1363–e1375. DOI: 10.1212/WNL.0000000000206758

  4. United Nations, Department of Economic and Social Affairs, Population Division. (2024). World population prospects 2024. https://population.un.org/wpp/

  5. Feigin, V. L., Vos, T., Nair, B. S., Hay, S. I., Abate, Y. H., Abd Al Magied, A. H., ... & Gadanya, M. A. (2025). Global, regional, and national burden of epilepsy, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021. The Lancet Public Health, 10(3), e203-e227. DOI: 10.1016/S2468-2667(24)00302-5

  6. Poke, G., Stanley, J., Scheffer, I. E., & Sadleir, L. G. (2023). Epidemiology of Developmental and Epileptic Encephalopathy and of Intellectual Disability and Epilepsy in Children. Neurology, 100(13), e1363–e1375. DOI: 10.1212/WNL.0000000000206758

  7. International League Against Epilepsy. (2024, June 30). Developmental and/or epileptic encephalopathy with spike-wave activation in sleep (DEE-SWAS, EE-SWAS). EpilepsyDiagnosis.org. https://www.epilepsydiagnosis.org/syndrome/ee-csws-overview.html